patient care

Sorry for the MIA status. I have no excuse, other than summer is the “Peer Pressure” King of all seasons. Am I the only one who feels guilt if not sitting by the pool on a warm, sunny day? Anyways.

Tomorrow, I head in for infusion #10. Monday, I have the CT scan to measure where we are with pulmonary and tracheal disease. On October 3rd, I will visit the oncologist to learn what our next step is based upon those CT results. The hope is that things have continued to resolve and that would allow us to try infusions at six week intervals, instead of three week intervals. I spoke to a fellow warrior a few weeks back, at another clinic, and she was at twelve week intervals. How awesome would that be? No visits to the OR, and besides flushing the port every four weeks, infusion visits spacing out to twelve weeks….awesomesauce. While the days of post-infusion nausea appear to be over, the Avastin headache is real and I’m hopeful that if we can space things out more, I can stop that nightly dose of Tramadol. (Although, that dose of Tramadol at night does have the pleasant “unexpected” plus of reducing my night-time coughing.)

My last OR trip was December 2017. I’ve been scoped in office twice since then, with no disease present above or on “my larynx.” (I use air quotes as a reminder that my larynx looks more like an alien from a far away planet than an actual larynx.)

I get asked frequently how I am feeling. Most days, good. Some days, incredibly tired. I’ve always said that if I take a nap during the day, it must be the return of the plague. So many causes of fatigue, especially if a female in her early 50’s…..so it could just be the Armageddon raging between hormones a and b and c and d and e and f and so on….younger gals…get ready….it knocks you on your backside. That’s all the encouragement I have to offer.

Something I’ve noticed since I began going to the infusion clinic (head/neck oncology cases are infused on Wednesday and Friday), is that I’ve seen many come and go. I find myself desperately wanting to ask where they are now….did they complete their treatment cycle, did they end treatment, did they die? I especially want to ask about the grumpy former Marine guy. Some days, I cringed at some of the things he would say, but I find myself looking for him at each check-in. I see the same nurses each visit, the same front desk workers…..we’ve reached the point where we don’t even talk about medical things…it’s about summer trips, favorite foods, etc. I’m normally on campus about five hours total. A good bit of that is sit and wait. Some are there twice that amount of time. Some even go home on treatment.

I’ve tried to learn things while on this journey. Or at the very least, see things from a new perspective. I keep coming back to the fact disease, illness doesn’t care about your socio-economic status, what title you hold at work, your good deeds, your mistakes….every single person that I have met in the journey could be anyone of us. Just as I cannot make sense as to why I have this disease, I cannot make sense as to why those I have met have their disease. I hear the phrase, “I have been blessed with good health,” a lot. I’m not sure we can really say that. That implies that God favors one of us over the other, and that’s not His character. That phrase implies that I, at the age of five, did something that had God remove a blessing of good health from my life. It reminds me of the prosperity gospel, but used in health conversations. I digress.

So, back to infusions and paps. I haven’t had a papilloma dislodge in months now. I can still smell more than I have been able to smell in years. (This is a mixed praise….the mixed smells of a food court make me want to turn green and run to the nearest trash can.) I have never regained that amazing voice that I had for that period during the NIH trial. Just as we have no idea what brought it back, we have no answer as to why it hasn’t returned. Side effects, gosh I can sometimes be so tired. The Zofran and I have cooled our relationship, and that’s a good thing. The blood pressure settled into its new norm. Still high, but not let’s get this girl on medication serious. We all know the cause of the rise, and that allows some “leeway” in whether to treat it or not. As I said above, the Avastin headache is for real. It’s always in one spot. Thankfully, the nightly dose of Tramadol has brought the headache count way down. The port is still the best decision I have made this entire journey. The placement was awful, and I’m not sure I could do that again without being under general anesthesia. For any of you that receive regular infusions, I strongly encourage a port. For now, the insurance approvals for the drug are rolling in without an hiccups. I know how fortunate I am to have insurance that approves an off-label treatment. I do not take that lightly.

Now, I assume you are still wondering why I typed “Fuzzy Faces” in the title? Well, here’s the little “oops” we have been dealing with the past few weeks. Seems highly likely that I experienced TIA’s. One in Austin, one upon return from Austin. We are still in the “testing” phase, and I have two more weeks of the thirty day heart monitor, but so far nothing is jumping out. Neuro is leaning heart, so we shall see soon. You want to see an ER move…walk in and say your face feels numb on one side and that earlier in the week you lost your words and couldn’t recall words…and that your right hand went numb. Seriously, if you ever experience anything that could be a stroke, run to your closest “Stroke Certified” center. I was impressed and I don’t impress easily when it comes to medical anything. PS-Also, don’t be me and ignore the Austin symptoms. So, I’m a semi-robot walking around with this patch and hi-tech bluetooth talking thingy. I have trouble keeping up with my actual phone, so adding another “phone” into my daily life has been fun. Yes, it does give you little annoying messages if you go out of range from it. It also beeps very loudly at 1AM when the patch monitor dies and needs recharged.

Well, there ya go. The update. Exciting things in October though…some of us RRP folks are gathering in Atlanta, then there’s the AAO conference, then Kimmie will be traveling to DC to rep the RRP warriors at the 2018 NORD summit, followed by a trek west to celebrate the best Birdie in the entire universe. So, here’s to better treatments, a cure, discoveries to restore voices, and dismissal of resentment of being sick. (Yes, I’m human…some days I resent this disease like I resent frogs.)

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This will be the first entry in the series that will follow my journey in the use of systemic Bevacizumab (Avastin). I hope to mix the science with some humor and maybe even a dash or two of joy/hope.

While I breathe, I hope.

Episode One.

One of the first pharmaceutical treatment ideas that was discussed after my lack of response in the NIH trial was pursuing systemic use of Bevacizumab What is Avastin? Now, you are likely aware of the hurdles and obstacles that walked out in front of my bus..primarily that of insurance approval, followed by the amount of work that I, as a patient, was having to invest into the idea. Off-label, especially with no clinical trial data, is a hurdle most insurance carriers simply don’t want to be part of-evidence based medicine is the name of the insurance game. With a few papers on limited use as the only “pay for this” ammunition, it’s been an uphill battle while also wearing a fifty pound backpack. (Which basically is the same as a “sloth.”

Fast forward to this past week. Background on most recent surgery-my tracheal disease is in high gear.

December 2017 Tracheal Disease

I’ve wanted to go down this therapy road for months now, so to see the disease in such an aggressive phase, as well as the pulmonary involvement, I became even more determined to make this happen. Emory has an outstanding RRP practice. What I learned this week is that they also have an outstanding Head/Neck Oncologist. Dr. Saba believes in this idea. He agrees with this option for my case. I’ll be his second RRP patient on this protocol. The ball started rolling and in warp speed….a schedule is set, pending a stable CT scan. I’m more important than the insurance hoop….they will get me over that hoop-not my burden. We have a plan. The plan is in place and I have one job-show up. No hours spent working for approval, no hours spent digging for every shred of evidence I can find in how this treatment has worked in several RRP patients….my only concern is making sure I am ready for infusion day and following my “to do” list. (Well, and staying away from Dr. Google on side-effects, possible complications-little information is available on side-effects, complications in the use of Avastin as a stand alone treatment.)

There’s anxiety over what to expect, as we all react in such an individualized way to any medication, but especially those used in the oncology field. Will I be as sensitive to this drug as I was to Avelumab? Avastin is a VEGF VEGF How It Works, while Avelumab was an immunotherapy (PDL-1 inhibitor How Do PDL-1 Inhibitors Work). There’s anxiety over my pitiful veins holding up, but a port is something we want to avoid due to increased infection risk. (Ha, well, maybe the anxiety is over the IV in general….I loathe those little creatures.) A prayer for urine proteins to stay normal, blood pressure to not spike, and for no bleeding issues to arise! (We do know that my Benadryl push needs to be diluted and slow, so that’s one less issue to worry about on infusion days! Also, am I the only person on the planet that drug doesn’t render comatose?)

So, there you have it…..scan, three infusions, scan, if regression-repeat and then work into a maintenance routine.

While on Avastin, there will not be any OR procedures. Hopefully, this will allow a long period of maintenance, a much needed break from the OR, a break from this chronic cough, and will work to prevent anything from converting. Will it kill the virus? No. Will it hopefully give me some relief until science catches up to the mechanism of the virus-hopefully.

I’ve included links to the few papers we have available on systemic use of Bevacizumab (Avastin) for those with aggressive tracheal/pulmonary RRP that may be interested.

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This past week has been incredibly difficult. Difficult in a way that I don’t even know how to process with authenticity. To be honest, I am mad at God. I still trust Him…but I’m mad. Forty-five years of RRP…I’m tired…tired of this broken body that I neither asked for or caused. I entered the trial with such hope. The idea that we may have a pathway to a cure….or even just a nonsurgical option….my mind raced ahead imagining a life post-RRP. I didn’t allow myself to really consider being a non-responder. I did all the things I was always told to do…I prayed, I trusted…I may have even softly begged…..and at the end of the day….I was the first non-responder. Now, I sit trying to understand the why of it all….and I realize I’m just mad. Does that make me less of a Christian? Does that mean I don’t really trust God….or does it simply mean that I am human living in this world that can often seem so cruel….even to those who have the strongest of faith?

I’ve learned these past few days how cruel some of the “right things” Christians say can be….I recall learning some of these after my Mom died…but they seemed easier to hear then…maybe because I knew for certain she was now without pain….she was free from the cancer that had entered into her life ten years prior to her going “home.” She was in peace…and I could wrap my head around that and be ok with all of the grieving process….but this….now…I honestly am struggling to understand the why of it all.

So, here’s my recap of my first Avelumab evaluation..three infusions down..two OR procedures down….and it all comes down to a CT scan.

I flew into DC on Monday so that I could avoid that 5:45 AM flight on Tuesday….Tuesday began with labs and my being able to follow up on Mr. Wesley’s house story….such a kind man. His family came here from India…and his heart is so tender, yet so funny. Seems they put in the contract on the house of his dreams…and then his wife became upset with him and cancelled the contract…then went to India for two weeks to visit family. Ok….you just have to imagine this story…it is and was hilarious. He described every detail of the house to me on Tuesday morning…he was in love with this house, but he knew…it was no longer his house to own. I’ll come back to Mr. Wesley in a bit. Soon, it was time to head to the CT department. When my name was called and I entered the CT room, I was caught off guard by the weight of the test and everything this scan would stand for….a machine that is incapable of empathy…untruth…what it would tell the radiologist reading my results for the trial would be 100% without human error. The results would be whatever they were and no one could argue against the results. Thankfully, I had made dinner plans that allowed me to escape the over-thinking nature I hold….a couple of hours where I didn’t ponder the “what if, the results…”

My fellow RRP friend and I met in person for the first time for dinner on Tuesday evening. Irish food in Chinatown. Such a neat place for dinner and you honestly felt as if you had stepped into an Irish pub in Ireland. Fellow RRP folks…well..we are one big family. The safe space of not having to explain our voice, our life…knowing the person across the table from you gets it…people you have never met in person, but you would do anything for them…because, well, our community is small, but our hearts are large. Back to the red line I went…and whether I wanted it to or not…Wednesday was coming.

Lee flew in to DC on Wednesday morning. The timing worked out so that he was entering the NIH just shortly before the clinic appointment where I would be given results…where I would learn if I went on to cycle 2, or if my time in the trial was coming to an end. Doctors have terrible poker faces…as do the trial nurses and trial PA’s…no one even had to say a word. It was written across their face. The defeat and disappointment we all felt…so real. The idea that I would not respond at all…didn’t even enter my mind before clinic. I was unprepared for that result…and maybe in an odd way that was good…would being a partial responder and removed from trial be harder to take in? We chatted about what comes next (exit CT, labs, clinic on 3/28)…and what is being learned from my blood and tissue samples…in that moment I didn’t get emotional. I was stoic…almost having this overwhelming desire to encourage the team….my emotions would wait…clinic was over…back to the floor I went and with a quick check-out for the afternoon, Lee and I were on pass. DC in four hours would be the goal…Lee’s first trip into DC.

DC was a very welcome escape from all of it. Just the outdoor air and walking from the Capital to the Lincoln Memorial and points in-between. Walking through the WW2 Memorial, the Korean Memorial, the Vietnam Memorial….seeing quotes from those before my time here on earth…words of wisdom we need today in this sea of chaos swirling around us. Albert Einstein and I had a little chat about RRP and I’ve enlisted him to help find a cure for all of the community…he seemed receptive to the idea. Soon, my body said it was tired and back to the red line we went…and with a stop at Bethesda…dinner at Passion Fish. We grabbed the floor staff/nurses a box of cupcakes from Georgetown Cupcakes and back to the NIH we went. Surgery time would come soon on Thursday…cupcakes delivered, thank you notes delivered to staff/nurses and to my Mr. Wesley.

Due to my CT results, I would receive no more infusions and my Thursday would be a trip to the OR for a normal RRP debulking procedure. Still stoic…still trying to be Ms. Positive Spin…I knew it was all a lie….but mask on…I pushed through. Surgery came and went….the plus side of surgery with no infusion to follow was that I could take the steroid push in the OR to help me come out of anesthesia quicker. Instead of sleeping until 6 in the evening, I was awake and functioning by 2:30pm. Oh, and no research labs since I was on the door out….now back to Mr. Wesley…at some point in the afternoon, I decided I wanted to walk down for better food. I did not know on the basement level was better food than the room service or second floor. When I returned to my room, there was a note from Mr. Wesley. He left me a note to look at his house…the house he was not going to be getting…something so simple that meant so much to him, he wanted to share. That note is going in my hatbox. It’s a treasure.

Friday was fairly boring with the exception of my love of Zofran….fewer team members came in on Friday….and as nurses learned of my response, we all worked through that. I think that’s what makes the NIH so special…you are part of something bigger than yourself whether as a trial participant or NIH employee. Your win is their win…your loss is their loss. Lee and I felt prompted to shower the unit with a bit more love, so we sent a bouquet of flowers. Nurses and the staff on floors are truly the unsung heroes of medicine. They deal with us when we are often at our worst…and often without a single thank-you. When I would walk by the flowers, later in the day, I would smile knowing those flowers represented the level of care I was part of.

Saturday was everyone on airplanes back to Chicagoland. Josh coming in for break on a flight, me on a flight and Lee landing at Midway…a quick trip to Raising Cane’s and it was indoors under a blanket…where Zofran and I continued our relationship…still ongoing today….

So, that’s the recap of the week…now back to the realness and my thoughts now.

I learned something over the weekend from Lee…it seems in pre-op…I broke down. I broke down in front of the entire team. I have no memory of this…but I am told I was talking about the journey and how I ended up where I had so prayed not to end up. I’ve tried to see the perspective of this…that my coming home was not the same as someone being removed from trial that had stage IV cancer…where their coming home was “going home to die.” I was coming home to the same life I had before entering the trial. Yes, the drug has forever altered my immune system and we don’t know if I could possibly have a delayed response….there’s just so much unknown in the world of cancer immunotherapy. I can’t let my head go there…to that possibility…because the heartache a second time…I’m just not that strong. I’m really not strong at all…I just have learned over the course of a lifetime how to wear the mask for those around me…..but if I am being honest…I envy most everyone around me..the ease at which they talk…the ease at which they can live life…life without counting down days until the next OR procedure…life always wondering if this scan is the one that shows conversion to cancer…life without having to wonder what changes are coming to healthcare in the US….life in a world where so often, those with visible signs of being “less than perfect” are in many ways sitting on the back of the bus.

As I said in the blog before this….nothing about this is well with my soul…and I don’t know when it will be. I’m human and want to know why I have this disease and why I didn’t respond…when others have. I don’t want to hear how it’s all part of God’s plan…the God I love….He can most certainly use everything to His good…but I don’t believe in a God that brings sickness to his beloved. Sickness is from this fallen, broken world…but, I’m mad today….when I stop to think of all of it…the tears just roll down my cheek…so, I am working minute by minute to push it all back down….

Do I regret the trial? No. I would honestly do it all over again without hesitation. It was the best shot I have had in my lifetime….and the things being learned in this trial….they could lead towards the cure I so crave…even though I know now that a cure doesn’t mean life without a trach. For those responding, I am so happy for them. That’s where I can go back to family….family that cheers one another on…but also sits in the grief of the disease when necessary…which is what I am doing now…something I don’t recall every doing before…letting myself sit in the grief of my disease and it’s impact on my life….maybe allowing myself this process will help me not grieve this disease again….where I decide to live a life without the mask.

One day, hopefully soon, I can be like Snoopy in the pic below….just not today….one day.

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“So, let go my soul and trust in him…the waves and wind still know his name…It is well, with my soul.” “Whatever my lot, it has taught me to say, it is well with my soul.”

I’m going to let what’s above hang there for a bit and come back to it towards the end of today’s entry. I finished Cycle One of the Avelumab trial for RRP this past Friday. My third infusion is now in my past. I’ll chronicle this trip and then take this entry much further than the other two…

Wednesday: The third infusion trip is a no OR week. I’ll be honest, my body was so tired from two trips to the OR in three weeks, I don’t know if I could have honestly gotten on the plane back to DC had there been another OR for this week. It would have been a pure “God Thing” if I had…and I suppose that’s exactly how it’s meant to be….when my strength fails…His strength carries me. And while I sit here and type my doubts of being able to do it again, I know without doubt, the strength would have been there at just the right time. I left the chilly air of Chicago to go to the DC area of sunshine and seventy degrees. Coat was left at home…not even a light jacket was packed. Checked in at the NIH, rejoiced over my private room (3 for 3), and reconnected with staff that has quickly become folks I am going to miss greatly when I am done with my season in this trial. Nurses that greet you with a hug….desk staff that knows your name as you walk into the wing from the doors.

Thursday: My incredible phlebotomist (AKA, nicest vampire ever.) arrived at 5:30 AM….bed was laid flat…because my BP is still not behaving and in small attempts to prevent another “incident” like week one, there are now precautions taken to help my BP do its thing a tad better. I’ve stopped looking at the vial count or size….research labs are what they are…no sense looking at growing apprehensive of a repeat of week one. My Vampire and I have had this little unspoken agreement…he comes in, I take out my arm for that day, he does his thing, turns out the light and closes the door. Remember that….because if you know me..you know that I don’t like to speak when first awoken from my slumber….

Clinic came quickly on Thursday, and I was sitting on the familiar chair next to the scope of horrors….ok…maybe that’s a slight exaggeration….but I’m sorry….even with the nostril numb…I really don’t want to be part of the black lighted scope going down my nostril to enter the airway and view my larynx and such….and then quickly placed down my cannula for a quick peak at the lower portion of my trachea and bronchial openings. Your body naturally wants to fight this procedure, but I cannot say this enough…Dr. Allen is indeed the “Scope Whisperer.” He should travel-giving a masterclass in his technique. Now…imagine my joy when I only had to do the trach scope portion….oh lung metastasis, you have given me a reprieve over a scope! My lung lesions are my trial criteria instead of my tracheal or larynx lesions…so no scope on this third visit. Insert very happy dance. I was then on pass for the rest of the afternoon, and after my routine pregnancy test, off I went to enjoy an incredibly beautiful day down in Bethesda.

My doctor highly recommend dinner at a new Greek restaurant. I must say…I’ve had places such as Taziki’s, but never really had what one would call traditional Greek food. I’m a huge fan now…I dislike yogurt…as in I don’t understand the mile long display in the grocery store. The texture and taste just aren’t my thing. Well, scratch that…I’ve learned there is a way that Greek yogurt and I do get along. Crispy Brussels sprouts mixed with pomegranate seeds and mint and tossed in a thick Greek yogurt. So yummy that I’m going to try to replicate it at home this week. I was in the area for lunch and dinner, so toss in a very French style slice of quiche for lunch…and I think it’s clear to all, I enjoy food. (PS…the quiche from the French bakery was unlike any I have ever had. It was tall and light..not dense.) The sun was setting quickly, so back to campus I went to enjoy watching my kiddo play in concert at Eastman and settle in to rest for infusion day.

Friday: My favorite Vampire came in again….at 5:30 AM. And you are not going to believe this…but he wanted to chat….about the negotiation process of buying a new home….umm..we have an unspoken agreement..we don’t talk at 5:30 AM…..I smiled, nodded even….but to say I was relieved when the door shut…well….again…I don’t speak first thing in the morning. Up, showered, back into comfy clothes for the infusion and then downstairs for “real coffee.” Then over to procedure wing for ultrasound on my two forearms to mark for IV placement. (PS-this is a super cool thing!) Back to Oncology wing for EMLA cream on those two areas and wait thirty minutes. Back to procedure wing for insertion of infusion IV. Back to Oncology to wait for Avelumab to come up and pre-infusion meds. A 50mg Benadryl push and I are not on speaking terms. Thankfully, for whatever the reason, I thought to mention my reaction to the drug to the team….and learned that my reaction was not typical and was an opposite reaction. So, this push was diluted and pushed at a slower rate…so much better. I did not tense up as badly, my teeth did not chatter…still didn’t sleep a wink…and did get a decent headache as it wore off later in the day…but so much better than the prior two infusions. An hour after the pre-meds, the bag was attached and the infusion monitor programmed….90 minutes. It’s surreal to me how much easier this infusion was mentally….the nurse and I literally chatted most of the 90 minutes away. We were working on solving all of the worlds problems and talking about being a full-time Mom with an autistic child….and how she could work somewhere much closer to her home, but chooses the commute to the NIH because of the mission…how the playing field is level….on the 3NW floor at the NIH…every patient is an equal…cancer doesn’t care about income, status, any of that…and I think that’s what makes it special…every patient on 3NW is fighting something that doesn’t discriminate….it touches every single facet of this world…from the poorest to the richest…patients like me looking for a new cure…patients like maybe the man across the hall possibly there for a “hail mary.” Every single person there…from staff to patient…part of research..something bigger than themselves.

Two hours post infusion, I was able to go outside and enjoy the incredible weather in the courtyard at my building. The sun, it’s warmth, medicine for this soul. Nausea began to creep in, so I headed back inside…insistent on “pushing through” and not taking medication. My “cure” of flavor blasted Goldfish and a touch of caffeine…seemed to be taking the edge of. I can do this. 6:20 my room phone rings…ok…who is calling me on the room phone? Oh…dining services. “Mrs. McClellan, do you plan to order a meal tonight?” Umm…..well…..I suppose since you stop taking orders at 6:30 PM, I should do that. I ordered my standard chicken, baked potato, salad, and a rice krispy treat. (Do not laugh…that’s one of the few “treats” that still tastes good..and it’s a solid “go to.”) Recall that nausea I was treating with my “cure”…..anyways….one bite of the chicken….and it was back. My cure had failed me…enter Princess.

If you recall, I mentioned Princess in a prior entry. She was, once again, my Friday night nurse. Princess started prodding me to take the Zofran around 7:30 PM….I, being the self-proclaimed nausea superwoman…was oh no…I can push through it…it just a wave. 10PM….I think I’ll take that Zofran after all. Now to backtrack a bit on my evening with Princess.

Princess and I had a good amount of time together Friday evening. The floor was slower due to several Friday discharges, so I found that nurses would linger….and Princess did as well. We talked about so much….Jesus….religion…differences between here and the democracy of her native African country that her family still visits..her mother actually lives there part of the year. (Let’s just say, I would probably have a key to my cell if I lived in her country due to my frequent visits for speaking out against elected officials…) Anyways…then we were talking about my journey the past two years as my faith has been on this winding journey…and we talked about our Muslim friends….and she said something that I will never forget. She came here at fifteen. She’s probably late 30’s now…”I never knew religions hated one another until I came to America. In Africa, Muslims and Christians lived with a respect for one another. They attended our events, we would attend theirs.” That first sentence….it’s been on autoplay in my mind and heart since Friday. And then her telling me she has told her Muslims US friends to consider not wearing their hijab in public…she fears for their safety. My heart just ached. All the while, she is oozing joy….a joy that is infectious….a joy that can only be found when one has something bigger than themselves to look towards. She talked about the way she travels the world with her children…wanting them to see the world in the bigger picture that it is…they live simply and frugally to travel to other cultures. It was one of those conversations you cherish…but man..that first sentence. The night came to a close with my Zofran complete….

Saturday: Discharge day. When your doctor shows up on a Saturday in basketball shorts bearing the gift of a cup of Starbucks…I mean seriously….how can it not be a great day. We chatted about what comes next….about different things taking place in the RRP field of treatment….and then…I asked a question that gave me an answer that, I’ll be honest….I’m struggling with just as much as the possible outcome of my next visit the week of March 6th. This is where I am going to end the day to day chronicle and go a tad off the rails from the prior two posts….

(PS-about half way home, 22K feet in the air, nausea came swiftly and I just prayed that I would make it off the plane in Chicago without being sick. It lasted all day and was the hardest wave I have experienced so far. All I can think, is that I did not have on my “patch” that I wear to the OR and maybe that’s why it was so pronounced. Thankfully, Sunday was not that way and today has been easy as well.)

Off the rails a bit…

I knew, when I chose this trial, the bar was set high. The bar for “success” and the bar for going on to cycle two. Think of the bar as the same bar the Chicago Cubs strived for…and it took years..a bar so high that you wonder if it’s even possible. For the Cubs, they finally met that bar and went over it much higher than any dream could have predicted. That’s the bar set on this trial. I knew my body was such that it’s not thirty…it is the age that it is…and I knew that I had to also keep in mind possible life altering damage to my organs and endocrine system that can occur with the use of this class of drugs, especially in longer cycles, rare, but it does occur. I knew that I wanted my participation in a trial to be about more than just me…I wanted the research related to the trial as well as other trials my blood has been used for to count towards that elusive bar of “cure.” I knew going in, I could possibly be looking at three doses and then excluded….and I was ok with that…or at least I thought I was….

I’m done with my third dose. When I return for my visit March 6th week….it’s my first trial review since inclusion. My first CT since that initial CT weeks ago. A CT that will be read without my trial doctors having access to the scan….they will simply get a report on whether I met the criteria for staying in….or my time has come to an end. My bar…is 30% reduction in size of the largest lesion in my left lung. 30% of 2.4cm. My world record level bar…is set. Just a few mm will decide this outcome….and here I am, staring at this bar…that came so quickly….and my peace and assurance about all of it….suddenly, it doesn’t seem “well.” I know every participant so far has responded….and I also know some have just barely, literally mm, been removed from further treatment. Wednesday, after Tuesday CT, I will walk into clinic not knowing if I’m headed to OR on Thursday for a standard debulking procedure or if I will be enjoying DC on Thursday and having an infusion on Friday. I don’t think they will even have to say the words….the team is so invested in the patients on this trial…it’s so personal to them…I think I will see it on their face. And again…it still doesn’t feel “well.” There’s an unknown to all of this as well….the class of drugs in the cancer field is so young. Literally, so many just barely out of phase III trials….there’s a huge unknown as to the how it works longterm….once treatment ends. My disease is considered “pre-cancerous” for trial purposes…and while the lab says one thing…the reality is once you add in the variables of an individuals immune system, the host environment for the lesions….the lab can only predict so much. So, if I don’t reach that bar….will the drug still keep working to reset how my T-Cells work against my disease? Will even a small response possibly continue on to more of a larger response? It’s an unknown…..immunotherapy drugs for cancer are filling the pipeline of every major pharma that has a division for these classifications of drugs. Jimmy Carter is walking around today with no evidence of disease…from his treatment using Keytruda. The commercials seem like it’s the miracle everyone has been searching for…but reality is…the full response rate is around 30% even for cancer patients….but 30% response if you are stage 3/4 is an enormous success rate….so I take that and I wonder…if that same full response rate applies to my disease…3 in 10. I so long to be one that hits the trial criteria to continue on….and I so want to be ok with hearing I am not continuing on….but truth is..today…I am not “well with my soul.”

Something else took place this trip….and it’s that thing that has broken my heart….a hope that I had clung to for so long…for now…not possible. In my head, this trial would go like this: trial, full course of trial inclusion….no evidence of disease…reconstruction of larynx…de-cannulation of trach. I go back to life pre-trach…one I remember…a life pre-RRP, I have no memory of…so…but right now I have the best voice I have had in probably 20+ years….so now, I do have the memory of a almost real voice. One that happens with little effort from me…one that doesn’t create oxygen deprivation headaches…one that allows me to feel almost normal in conversation even with strangers…one that I have used…a lot…often to just say something to a stranger I never would have said prior to now…a “you are so pretty” or “I love that purse” or even saying something to the child sitting on its mothers lap on the airplane….in some odd way, I feel part of this world again in a way I had forgotten what it felt like. To be able to complete the simple act of using FaceTime and truly being able to hold a conversation with my baby girl, my baby boy, and those precious babies I so adore…..how will I be “well” if/when it goes away? How will I accept hearing I’m likely never going to live life without a trach? That’s the news that broke my heart….even if it works…even if I could reconstruct my larynx….the stenosis is so extensive…my life would likely be almost impossible without a trach. I have clung to that hope for so long…that one day…it would be gone. I just assumed….I never really asked the hard questions…maybe even I knew I didn’t want the answers…but this weekend…I asked. And, I’m being honest here…it is not “well with my soul.”

To be even more honest…right now…looking into my return visit…I’m not sure not meeting that bar of 30% is “well.”..or will be “well” anytime soon. My heart is broken….and my hope that this drug has indeed had such a strong response is so large…that if I hear a no…it won’t be ok then…I’m giving myself permission that if it occurs…it’s ok to grieve the loss…to not instantly go to that fall break phrase of “God knows best,” because…I will likely question it a thousand times to God if I don’t meet that bar….and given my journey with Jesus and everything the past two years…I understand now…that’s ok…..I can question it…I can be angry …and He understands and He will wait on me until I am “well.” Then I also think…if I meet this first bar….will I selfishly start already asking for the next goal…or will I be “well” just knowing I made it to cycle two?

The song “It Is Well” in so many ways is my life song….some people have a verse that they use…but for me…it’s always been this hymn that has been changed into incredible worship music. Bethel Music has my favorite version and it’s the version on every device I own…the song I play in those moments..those days…those weeks..where it isn’t “well.” I cling to that promise…that hope that I honestly…can’t even understand in these current days where my heart hurts…it aches..for something I had clung to for so long…it’s a loss….something I am going to give myself permission to grieve over…just as I will either be celebrating or grieving an answer in just a few days…and I know now…that it’s allowed…it’s even welcomed….it doesn’t reflect a lack of faith on my part or even an unaccepting heart towards my life here in this temporary home….

So…today, much of this is simply not well with my soul…..but I’ll continue to trust that it will be….and that over the next few days as I look at 30% in a way I never have before…I will trust…even if the answer I don’t want comes….one day…soon…it too, will be well with my soul.

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“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”
― Nelson Mandela

I’d like to change the word “man” to “woman.” Done.

Fear….anxiety…..two words that have followed me into the OR for most of my life. It was never about a lack of faith, and I honestly find it incredibly cruel when people say to others, “If you had more faith, you would have less fear/anxiety.” Can we agree to toss that line into the compost pile? Back to fear/anxiety….I suppose as I grew older and learned more about what can happen in the OR, I developed a fear of the process. Each needle would create a tension that worked against my body relaxing to lessen the pain. Then the major medical mistake that nearly cost me my life….and an irrational fear took over any resemblance of rational thought when it came to any type of medical procedure….my first thought when coming out of anesthesia had become, “I am alive.” Mix all of this into a life where over 250 surgical procedures have taken place….and it’s not too far fetched to say there could be some PTSD in all of this….a reluctance to do what is needed in order to live life more fully…because of the fear and anxiety of past issues and knowledge of what can and does happen under general. None of which is in existence because of a lack of faith…if there was a lack of faith issue, I think long ago I would have grown so angry at God that I just walked away entirely. So, I start with this on this blog entry just to gain a little insight into why what seems so mundane…is truly a celebration for me. My entering this trial, was a giant leap of faith….a giant test of what my courage level is…and even greater test of what I was willing to work through when the fear knocked so loudly.

Cycle One, Week Two

Monday: I arrived into DCA after an uneventful flight. If you read about the prior flight, you know this was a very welcome change. It’s still unnerving to enter approach at DCA and see water in front, behind and on the side of the runway. Much like that runway at Boston. The wheels touched down and you are thrust forward as the brakes are applied to prevent water issues. I’m always silently relieved when the person next to me isn’t a chatter. I am simply on the plane to get to point B from point A…..I’m not that passenger who even tries to utter more than that polite nod and smile as the person sits down in their seat. I follow that rule of, “if earplugs are in, or a book/iPad out…there’s your sign to not speak.” Soon, I was on my way to the NIH campus to get admitted and being the week.

Monday brought a fun adventure for dinner into Bethesda. I was able to finally meet a Chicagoland person that I had met via Facebook through an Arkansas friend…crazy that it took being in the DC area to finally meet. Such a great time of learning about one another…and oh the crab cakes….Alabama sourced blue crab, hardly any filler….oh how I love those crab cakes! I am beyond grateful for the gift of independence given to me while I was growing up. It may not have seemed like a gift at the time, but now…I treasure it. Not being afraid to travel alone, venture into parts unknown…tackle public transit…and walk confidently as I explore…thankful.

Tuesday: This week of the cycle was more downtime due to no scans or other testing outside of copious amounts of blood drawn each AM…at 5:30 AM. Seriously..I’m calling it. Vampires…the nicest vampire in the world…but still….work done before the sun rises…and it’s blood…there’s a possible link. (This is alternative facts.) So, once AM labs were done, it as time to get ready for clinic that afternoon. Back to the fear/anxiety paragraph…over the years, I have developed a true fear of being scoped in the clinic. There have been times I literally had tears running down my cheek, simply from being so fearful of this procedure. I know God knows that fear…and He also knew that I needed to do this trial. The first scope by Dr. Allen in December, I used music to try to distract my brain from the process. It was the least uncomfortable scope I have ever had. And then we are at this past week….and I used no music…nothing…I’ve jokingly referred to him as the “scope whisperer” and I am amazed at how the fear is just gone. Once my video was complete, I was done for the day, so I put on my “Where’s Waldo” hat and ventured back out. PS-passes off campus are a glorious thing. I grabbed a late lunch/early dinner at an authentic Spanish eatery. There were menu items I would not touch in a million years, but was thankful for a great waiter who guided me towards safe choices….I’m a fan of those safe Spanish choices. Tapa style eating is awesome! Then I grabbed the Metro back to campus and caught “This Is Us” on TV, and called it a day.

Wednesday: Due to my pitiful, small veins, I was not cleared for Aphresis…so once my AM labs were drawn and I had seen everyone on the teams dealing in my care…and the visit from the social worker….I had a free day. There was talk of running fluids to prop up my BP, but that would be done that night if we did it at all…..so with confidence..down to the Metro I went…I was headed into DC to the Newseum. (If you know me, you know I am a total news nerd…so when I heard there was an entire museum dedicated to the First Amendment and historical pieces from all mediums in journalism…well…my Disney World.) Then….I was stumped. The side of the Metro that would take me where I needed to go, was down….and the marquee with how to use the one track going both directions was down…I was a lost goose. I had no idea what to do….so…..because I’m such a go with the flow person (you can laugh now), I came back up from the depths of the Metro and decided I would just walk into Bethesda Row area. Being able to walk 1.4 miles in February and not be a popsicle…glorious. I was able to pass by things on the NIH campus I had missed, always being on a shuttle or down in the Metro…able to see small businesses up close, venture into an incredibly nice Teeter….I know my being able to do such a jaunt (even if it seems small) is a gift….there are times when that would seem an impossible feat, so I am grateful for those days where normal seems almost within reach. NIH rooms are equipped with the most awkward showers. I can barely shower safely, so washing my hair is just a big production. I decided to take in a “blow dry bar.” This was my second time to use one of these, and I must say…better than a pedicure. Once my hair was “southern high”, I grabbed a late lunch….and returned back to campus catching an NIH shuttle at one of the local hotels. NIH makes getting around so easy.

Once back on campus, it was time to do those little rituals that I think help with OR days. If for no other reason, those rituals give me some sense of control. Soon, it was Ativan time…if you don’t take advantage of the beauty of Ativan before OR procedures…you should. And in the blink of an eye….the two hard days were here.

Thursday: I have noticed, that OR days bring a different pace to the nurses caring for you. I’m one of those that had rather wait to closer to time to change into that lovely gown, but it creates stress for those charged with getting me ready. Patch-on. Second Ativan-check. Time to roll to pre-op. OR days are just odd to me now. When I was younger, the bounce back from all of it was so quick. Now, it’s simply not the case. I remember the IV being started….and that’s about it. My next memory would come about 8 hours later…when I was awake long enough to eat some of a baked potato and drink some fluids…then back to my own “La La Land.” My OR IV failed during the OR, so I woke up with one hand swollen and throbbing and an IV in the hand that had no IV just a few hours earlier. One cannot express the confusion this created in a very drugged mind. I would write more about Thursday…but I honestly don’t remember anything else. Only because it’s written down, I can say there were no new growths…and maybe some change…too soon to really know if it’s change we are seeing.

The big news of the OR and the week comes at the end of the blog…

Friday: My second OR IV was failing, so it was a relief to get that removed before it caused more issues. Before I could even brush my teeth, it was time to head to the procedure wing to have my infusion IV started. It’s so important that the infusion IV be in a strong, healthy vein, they use ultrasound guided methods to start that IV. I’m an IV baby. I want the injection of local….that wasn’t written into the trial protocols, so I have to settle for the cream. It was placed to low on both arms….so, in what can only be described as a huge moment of either delusion or bravery, I let her do the IV with full sensation….granted it was only a 22 and it was in my forearm…but I did it. I don’t want to do that all the time, but it’s huge for me to be able to say I did it. I stepped over another fear mountain. Back to my room, to pull myself together for the day, eat some breakfast and prepare to get pre-infusion drugs. (PS…I cannot speak highly enough of the care at the NIH on the oncology floor…the nurses are incredible…and they truly love what they are doing.)

My infusion head nurse was probably my age, maybe a little bit older. The time had arrived for the Tylenol and massive dose of Benadryl….I seriously have found the Benadryl to be the worst part of infusion day. It just makes you feel horrible and I am one of those that it doesn’t make sleepy…it makes me tense. Not a fan, but it’s necessary to help prevent infusion site issues. 11AM. Infusion started. This cycle, I didn’t even glance over to the to the bag. Not one time. It’s infusion rate was increased twice per protocol, and soon it was over and the line was cleared…and it was done. I ordered a small lunch and then spent the better part of the day trying to recoup from Thursday OR day. Anesthesia just isn’t a friend to folks my age, and two visits to the OR in three weeks..well…not a fan. The teams came by to follow up on Friday and then my Princess came on shift. Princess….I still just can’t begin to express the joy she oozes. She stands at the computer in my room and she is singing while she charts and scans. Seriously….how can that not make you smile? Princess walks in, and her first words to me this visit, “Ms. Kim, you look tired. Let’s take your night meds early.” “Umm….can we try to wait to normal time?” “Now, Ms. Kim, I’ve been doing oncology floor for 12 years…you need to trust me on this.” I did…and she was right. Sometimes, there is no shame and no defeat found in fighting what your body wants to do. She helped me to see that asking for Zofran wasn’t failure…it was me realizing that what I am doing is not easy, it has consequences. Princess is so funny….she let’s me sleep once she gets that 10PM vital…sorta. She cracks the door occasionally throughout the night…just barely peaking in….I will miss her…and honestly the entire NIH staff when this trial is over or I am removed.

Saturday came.

Saturday: Even though you know it’s “go home” day…until you know that the final check has been marked on the discharge orders and final IV removed..nothing is certain. With my bag packed, some resemblance to looking human having taken place by simply putting on regular clothes and shoes..it was time to head back to DCA for a flight to Chicago. In this visit, I had been cared for by women from such diverse backgrounds. The unit already knows me….and I was able to meet some of the other patients in the unit on other trials. People, where this is their “Hail Mary.” That’s strength…at least it is to me. To see people walk the hallways that I am sure had rather be in bed…but they put one foot in front of the other and they walk. I learned I seriously want a purple, satin robe…what strength that robe spoke as that patient walked by. Nausea is real this time. I don’t know why I expected to escape side effects….but I did. Today is better…and I am hopeful that trend continues. I know the fatigue is coming….should be here Thursday….and it’s manageable and I am prepared this time…I won’t be caught so off guard. As Princess told me, my immune system is at war right now. Sweets sound and taste horrible now. Things that aren’t sweet, taste sweet. I never thought a day would come where I would walk past cake or a dessert menu without even a glance. That day is here. If this works….flip-flopped taste buds…a small price to pay.

Closing: I head back for an infusion/clinic only visit in nine days. No OR this next trip. My body is so thankful for this break from the OR. I’ll go back to the OR on the visit after next, but I plan to enjoy anesthesia free existence for a few days.

Now back to fear and anxiety. A few people knew what I was doing on this visit….I did this entire week solo. On my own. Just me…and me. I had such a confidence in my care, and I honestly don’t want Lee using all of his vacation time sitting in a clinic or hospital….I went rogue…solo. I cleared it with the team before I made the final decision. Today, knowing that I can do the OR, clinic, infusions…all of it…with confidence…solo…..I can’t begin to express the wave of relief over my entire mind. I needed to know that I could handle my health solo. I do so in clinic settings already, but this visit..I conquered that last frontier…could I do it if there was an OR visit…could I do it on infusion day…could I make it to my gate at the airport….and I did. There were incredible friends who prayed and checked on me all week…Lee who has learned through the years when to be there and when to just sit. Now, Lee is coming on March 6th week. That’s a big week in the trial and one that we both need to be part of. Today, this past week has me thinking of my Mom and my Dad….and my Granny Louise…and my Granny Page-the people that gave me this incredible gift of independence. I wish I had known it was a gift at the time it was happening….it’s only as a much older adult that I can look back and see how certain events and lives modeled…influenced me. There’s a power in knowing you can do your life solo….and a joy in knowing that for whatever the reason, God has said, I know you can…but you don’t have to. A spouse that understands that unique wiring I possess and allows me that freedom to soar independently when I feel I need to-I get to make that choice as different things come and go in life.

The countdown is back on….to Week Three, Cycle One.

Oh….in other news..while in Bethesda…my son was notified he was awarded a Fellowship for the summer at AMF and my daughter turned 30 and headed out for a Waco adventure. Thankful for kiddos that know how to soar..who take leaps of faith much more often that I could have ever dreamed for them. They teach me….and that’s just cool.

I didn’t load any pictures into this blog post. I am guessing a picture of my very bruised left hand isn’t necessary…I loaded some of them on FB and that’s enough.

PS, I did find that going downstairs to get “real coffee” in a robe and pajamas is totally ok….now if I could just get the same acceptance of that at the grocery store.

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I’m going to blog/journal this season….mostly for my memory bank…so I can look back and remember…and celebrate the successes as they come..and mourn the failures as they occur.

Monday:

It was a very eventful flight from ORD to DCA. With travel advisories along the northeast coast due to strong winds, the DC area was not included….and if you look at a map, the proximity to “travel advisory” area was….well….let’s just say the last forty minutes was a roller coaster and grown men were clutching their arm rest. I do not have a fear of flying, but I will be perfectly fine if I never have another flight such as that one.

After a shuttle from DCA to the NIH/NCI….it was time to get started on what has been a two year journey. (see prior blogs for more on the journey)

Let me begin by saying that the NIH is remarkable. Walking in and knowing every single patient there is in a clinical trial…and if you know the vastness of the campus, you know how inspiring it is to see an atrium full of people…all there to either be a patient, support a patient, act as a researcher, a care giver, a member of our military in medical service…to see the goodness of our tax dollars at work. To look at the mission statement of the facility and be in awe….to know everyone there has one purpose…medical science. Tomorrow’s cures, todays novel treatments, and eradication of diseases of the past. Doctors, nurses, fellows, patients, caregivers, shuttle drivers, administration, hospitality…from diverse backgrounds…from around the world…with one goal:

It’s still inspiring each time I read this statement. To know so many across this world do not have access to such care and research and feeling so unworthy that I do. Realizing for all the issues our healthcare system may have, people travel from around the globe because of the level of healthcare in this country. Let us never forget the scientific research and the resources required to have that standing in the world in regards to healthcare.

After visiting admissions, I was taken to the unit that would be my home for the next six days. As I exited the elevator with my admissions counselor, and we turned to the right…there it was. Oncology. One word…on the plaque indicating our location…the moment things began to feel real….I was really doing this. I was here. Soon, I was greeted by those who would be caring for me during my stay-in my private room (insert happy dance). Nurses, research teams, doctors, fellows, social workers….just when I was certain I had met everyone, another group would come in. This is where the NIH/NCI gets way cool. Yes, I was there for a specific trial…but…there were other trials ongoing that my blood/tissue would be of help to. Trials regarding the history of viral infections, trials working to map the genome of the disease, trials involving manipulation of T-Cells to create a desired response…some crazy cool research….of course I wanted to be part of that. To know that my participation could possibly lead to answers for so many….(this decision would also cause me some unpleasant issues, but nothing worth having comes without hardship-right?) A whirlwind of activity and then it was time to use the glorious “pass” to get off campus and enjoy dinner…

I’ve been part of the RRPF for years…people have become like family…people I have never actually met in person. One of the greatest gifts in my travel lately, is that I have had the opportunity to meet people I have spoken with for years. This trip, was no exception. The Woo’s have been an integral part of the RRPF since its inception. Their daughter, Jennifer, was honestly a rock star to our community. A Georgetown Medical graduate, she was also a RRP patient…and also had pulmonary involvement that had converted. She exuded joy and passion and she is greatly missed by so many across this planet we call home. Being able to sit down with her sister and her parents…and to be able to talk about RRP and finding out things about a family that has worked so tirelessly not only for their own child, but for people across the globe…it was an honor to sit with them…a debt I can never repay for the hours those original members have put in…for the goal of a cure. Monday…my cup runneth over.

Tuesday:

Tuesday began at 5:30 AM. My door slowly opened to my room, revealing a glimmer of light from the hallway…”Blood, I’m here for blood.” I hear the cart rolling over to my bed and there he was…seriously, the kindest appearing man. He would be “the vampire” for my entire stay. That’s my phrase, as there was seriously a lot of blood taken during my stay. The wake-up call of blood draws signaled the “green light” for everyone else to begin their day with me. There was the EKG, the CT scan, the vein assessment for aphresis (which I did not pass), clinic visit where I was able to spend time with my best friend, “The Scope”(Although, I do believe Dr. Allen may in fact be the “scope whisperer”)..and then the formality of signing final consent forms. Everyone, from point A to point B was so kind and qualified in their role. I do not give out medical compliments lightly, as I have a large memory bank to pull from when the words “exceptional care” are used…and Tuesday was “exceptional care.” I was given a pass to leave campus for dinner if I so desired, but the time change and my day just said, “let’s keep this party on campus tonight.” So, I took out my dining menu (yes, an actual menu) and ordered dinner and spent some time working on “Armor of God” and of course, social media. Soon it was time for 10PM vitals and meds, and my first full day was done.

Wednesday:

Wednesday began just as Tuesday did….the sound of a rolling cart approaching my bed. He gathered the tubes…readied my arm, prepared the butterfly catheter….wait..what….my barely awake eyes noticed there were eight empty vials on my bed…inches long. Ok..no problem….then…about tube four…a cold sweat, dizziness, tingling in my face…”I am super woozy”…..those words….and suddenly a nurse appeared, ice bag was placed behind my neck…and I felt miserable. BP was taken….64/31. Oops. Bed manipulated to bring my head lower than my legs. After about an hour, it had risen enough to allow the nurse to leave the room. I was exhausted. And my day had not even started. Soon, against my body saying “rest, Kim, I want rest,” it was time to head over to Anesthesia Assessment. Again, I cannot explain the quality of care with every department that I received. Since my aphresis was canceled due to my veins not being able to support the pressure that would be required, after my anesthesia consult, I was able to return to my room and rest. Teams came in and out, but I took advantage of an unexpected free morning to just “sit.” Soon, it was time for Lee to arrive and the two of us enjoy my final pass for the week.

My, I’m pushing fluids face…while waiting on Lee to arrive.

Lee came in and after he got settled, we left for the Bethesda Row area. (Ok…if you know me at all, you know why I picked that area….cupcakes…) We had the kindest NIH shuttle driver. He was this man who had a presence that would fill a room, but such a heart for what he was doing for others. We learned he was Mormon and that he loved getting to know the patients as they returned back to the NIH. Such a servants heart. Soon, it was time to head back to campus to beat the clock on meds…..normally, the night before an OR visit, I am filled with enormous anxiety. I wasn’t looking forward to the OR on Thursday, but I wasn’t anxious about it either. I had that level of confidence in my team and in the fact God had opened this door and had it all covered. My job was to just “show up.” With an Ativan for good measure, it was time for sleep.

Thursday:

I was the second case of the morning. Lee came in around 7AM, well after the “vampire” visit and a couple of nursing visits…..soon it was my time to go back to pre-op holding. Lee was able to come with me. He was able to stand by my side until the moment I was taken back to the OR. IV was started by my anesthesiologist, everything verified for the millionth time, my cocktail that prevents me from getting sick verified as well….and then…right in front of me…a huddle. Every one on my team….doctors and my OR nurses and my anesthesiologist, came together to go over the plan one more time as a group. That’s the last thing I remember…and even it’s somewhat vague. Soon, I was back in the room, with no pain, no complications, no sickness…just the strong desire to sleep. I vaguely recall Dr. Allen coming and telling me he got 12 samples…or maybe it was 14….the math is a tad fuzzy there. The good news is that so much testing can take place due to sample count….which not only could benefit me, but countless others down the road.

My vocal chords post-op. The little bumps you see at the top are papilloma.

Here’s a funny on Thursday….I barely recall having Lee order me noodles for dinner. It seems, based upon the note I wrote listing my food options, I also asked for toast and jello….literally, zero recollection of this….the note was his proof. I don’t recall getting on social media Thursday evening….thinking maybe I should double check and make sure I haven’t caused some type of International crisis….or said something to place me on a watch list somewhere….hey…stranger things have happened.

Thursday came to a close. Friday was coming….Friday. And just like that, the enormity of my decision poured over me.

Friday:

I want to say that I opened my eyes on Friday morning free of anxiety. From the blood draw, to the time I was sent down to have my IV placed via ultrasound (yes…my veins are that high maintenance)….the entire morning was just surreal. I could see the seriousness of the decision on Lee’s face…and I felt it so heavily on my heart. There wasn’t a moment of second guessing….just that moment of gut check… I have signed consent for a drug to be introduced into my body that will alter my immune response. A drug created for Stage 3 and 4 cancers….but becoming more and more accepted as a possible first line defense, especially in those immunotherapy drugs already on market. A potential game change in cancer…and if this trial is successful, a game changer in the treatment of RRP and pulmonary RRP.

The Infusion IV is ready.

After IV placement, I went back to my room. It was merely a waiting game now. Waiting for pre-infusion drugs to come up and the Avelumab to be delivered. They said when I had the Tylenol and Benadryl administered…it was almost time. It was almost time. 50 mg of Benadryl does not play nice…let’s just put that out there. The process was started. The bag was hung, the tubing fed through infusion pump….and attached to my IV port. Two nurses double checking every single step.

I watched every drop….every move of the nurses.

I’m not a snuggler…I honestly can’t tolerate the sensation of someone breathing close to me….it freaks me out. In this moment, I asked Lee to get beside me in the bed. Not out of fear. but out of that strong desire to feel safe in what was entirely unknown-Lee has been a steady safety net during countless trips to the OR…today would not be an exception. Would I have instant reactions….and I watched…every single drop…each increase in timing of dosage….sleep from the Benadryl escaped me….she did not arrive. Two years….two years of doctors appointments, scans, differing opinions on what course to take….and here I was….at the destination of this journey. I don’t think I will ever forget that moment the nurse looked at me and said, “we’ve started.”

And then….a little over 90 minutes later…it was completed. My BP doesn’t care for the drug, but not in a way that would disqualify me from the trial. I slept. Tears were shed by Lee and I both..but sleep did come….finally. The exhaustion of the moment overcame any desire to try to stay awake the next couple of hours. Dr. Hindrichs, the head oncologist on my team, as well as the PA and research nurse and social worker all stopped by…I can’t recall a single word that they said to me or I said to them. Friday evening came…..and no concerning side effects had occurred so far…

Then…night came…and I met Princess. Princess was my nurse for Friday might. Princess was a bucket of bubbles bottled up in a person. She came here from Africa, completed her education and obtained her MSN. She had been on the oncology floor for over 12 years. Tonight. God gave her to me. I was her only patient…We laughed about things I can’t even recall. She shared her concerns over events of the days last week…and then…still said she would always choose hope and joy. That’s what she wanted her children to remember. Hope and joy. She let me sleep Friday night. After my 10PM vitals, she agreed to let me sleep, only checking on me by slightly opening my door during the night. At 6:30 AM on Saturday, she came in just as bubbly and hopeful as the night before.

Saturday:

My BP was still acting up…nothing like on Wednesday AM, but enough of an issue it required doctors clearance to release me, even though my orders were already in the day before. I promised to push fluids….it remained steady….I was free to leave. The taxi was waiting for us downstairs at 10AM. DCA here we come. The driver…hilarious. He was telling us the most bizarre stories of fellow drivers during trips to the CIA and other “top clearance” areas around DC. He pointed out several landmark areas for us….often with the eyes off the road far longer than my heart desires….but we arrived safely. Soon, we landed at ORD and to our little cocoon of rest.

Saturday was hard. The fatigue from the drug slammed against me like a freight train. I was spent.

Sunday:

I woke up after twelve hours of rest feeling refreshed. So much better than the day before. There would be an occasional wave of nausea, but nothing worth even making a fuss over…a few sips of ginger ale did the trick. The fatigue was better…and seemed to come in the late afternoon after Lee and I had escaped for some Mexican food. I’m eating…because I know it’s important…but my appetite is a tad down. My hips are likely doing the Cha-Cha over this….oh..those cupcakes from earlier in the week…I had four out of six….in Bethesda. Still haven’t had a commercial red velvet cupcake that I say, “this is good.” I’m a master of red velvet…one day I hope to try one that I find worthy of four dollars. Until then…I’ll just say…mine are better.

I’m cleared to return February 6th for another week at the NIH. Then two weeks after that, I will come in just for the infusion….before returning two weeks after that for another full week and first evaluation of whether I stay in or I’m removed.

Today:

It’s time to head to my primary for the labs required on the weeks I am not at the NIH. I honesty don’t know if my veins will show up. Praying they do…because I have zero tolerance for anyone that can’t get in on the first stick….I’ll confess…I can even be rude about it. 45 years of needles will do that to you. Needles do not bring out my most Christ-like characteristics. I’m honest about it….that counts doesn’t it?

So far, I’m not glowing in the dark and haven’t exhibited any Hulk behaviors….the day is still young though….

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I am not a fan of needles. I mean, really, who is? If you are, I’m sorry, we just can’t be friends.

Most of you guys have been following the saga of my lungs and such for almost two years now…crazy…almost two years. One would think that I would be further along in this little journey, but slow and steady is my mantra…plus, I’m a classic over-thinker, and I have way too much access to google-ya know, Dr. Google. Anyways….I did it. I pulled that trigger this week and admitted that two spots were likely better off identified than left hanging out to their own little march. I had a lung biopsy.

Both lungs have several areas, but on the left are two decent size nodules that I think show out to put the right side to shame….should I tell them that I like the right side more because it’s not a show off? Nah….they would probably act out like a two year old by going all ninja on me….we will just let them keep thinking they are the belle of the ball. So, the left side was the focus this week. Decision was made to go after the one that was easiest to reach.

I have to say that once the team and I made the decision, outside of panic moments that occurred when I went to Dr. Google….I was fairly calm about the whole process. Thankfully, I have some folks who have walked this road already and they were so awesome to answer questions and give me “real world” experiences. Whether the biopsy came back papilloma (Squamous Cell) or cancer (Squamous Cell Carcinoma), I pretty much already had my plan in place and knew what to expect either way.

So, off to Mayo I went. As with any other trip to Mayo, it began the night before with dinner at Chester’s. Seriously, it’s good eats. Now….imagine my heartache when I realized my favorite menu item was no longer on the menu! I may or may not have whined to the waitress more than once. She encouraged me to order the Lobster Mac-N-Cheese and it did not disappoint. Now..was it as wonderful as my Thanksgiving Dinner on a Plate I had come to love…why of course not. You guys know I love Christmas…. Thanksgiving is close to Christmas; therefore, I love Thanksgiving food. Who am I kidding…I love food…and dessert-365 days of the year.

The morning came and off I went to check in for labs and such before I headed up to the procedure floor. Blood draws…such a mundane task, but so thankful for such an easy way for information to be gathered. (Hint…always ask for a butterfly…trust me…ask!!!) Then it was time to go up a few floors and check in for procedure. I kept asking folks to volunteer as tribute…no one did. Note to those reading…DO NOT check in early for procedures….you will be called early…just saying…..so called back.

First was the lovely ten million questions that I have come to assume is an attempt to catch you in a huge lie about your weight or height or drinking or smoking habits…then came my conversation about my veins and what typically can go wrong…what always goes wrong and before you could blink, the nurses went and grabbed an anesthesiologist. (Smart girls!!) During his search and destroy mission, we chatted and his brother did his undergrad and grad at my son’s grad school for Cello performance..small world. I didn’t get a sense of great pride from this brother about his brother…but I suppose if you can’t knock out excerpts from classical pieces from the 1800’s..well…jealously. I mean..doctor..sure..that’s awesome and all…but classical musician…that is so much better!

A little IV help for those who are a hard stick:

Have them wrap arm in a warm blanket.

Ask for anesthesiologist or oncology nurse to start your IV

Know where IV’s are the easiest to thread and ask them to use that area

Do arm weights to build up muscle mass in your arms. I was told all the medical reasons as to why this works, but again…drugs.

Drink plenty of water the day before/day of an IV stick

Ask them to not dig for a thread

Get the local. If they won’t give you a local, see number 2. Those two can.

With the IV in, I was sent back out to wait my turn to change clothes and go to holding. Can I just say that was a really short wait….it really wasn’t, but when you are still wondering just what can you do to make it where you can leave and go have dessert..it seems like a short wait!

Holding time came and before I knew it I was being rolled off to the procedure room. I wasn’t fearful, mostly just desiring to be fully aware of each part of the process. Surprises are not my thing-at all. I’m an order gal. I prefer my days to be post-it note organized-or at least appear that way. I can go with the flow, but that flow has to be about a 1MPH flow….anything more than that and well….you best have some cake to go with that chaos.

Dr. Welch and his team explained in great detail what was going to take place. As I was positioned for initial scans, I was given the first dose of medication meant to keep me relaxed so that the biopsy would go more smoothly—not sure if that is for the patient or the doctor performing the biopsy. As they then positioned me and marked the biopsy area, it was clear the meds had done much of nothing. Another dose…..another dose….fourth dose..bingo, we have a winner! I would be a very expensive addict given my tolerance to such medications. Initial bee stings as site was being numbed. Another slight pressure of a bee sting as the wall was numbed. A few pops of the biopsy gun, and it was done. I’ve had more breast biopsies than I can count and I truly believe this was easier-discomfort wise, risk wise lung beats breast though-lung risks will honestly freak you out a tad if you let them. I was then wheeled back to observation on my left side…..passed that faithful man of mine and of course, I hold up the peace sign. (I am obviously very chilled at this moment….peace sign? Really Kim? Invoking your 1960’s birth decade I guess.)

Let’s just say…if you have had a lung biopsy, you are a popular patient for that first two hours-that critical window where most complications will occur. I did have a slight hematoma come up that required some beautiful marker drawings on my back and some periods of pressure as they worked to relieve it and make sure it wasn’t developing into something more. I tried to rest. (Insert laughing of everyone who has spent any time in a hospital setting…the word rest….) Soon it was time for the initial X-Ray to check for pneumothorax and any bleeding that might be taking place. Check..Done…still, so very chilled. I think you could have told me North Korea had a nuke coming this way and I would have held up the peace sign again. (Suppose I shouldn’t joke about that given the events of yesterday.) Keep in mind, not only was I floating on the meds given in the procedure room, I was also on a narcotic to control my constant cough for 48 hours…..I was basically…zoned out sitting on Mars. Anyhow….about 45 minutes later, the team walked in and asked if I was ready to be released to the hotel. Wait? What? I can go???? I was told a six hour hold, so to be leaving so early….seriously folks…that’s God. I had zero evidence of even the tiniest of complications. Nothing! (2 1/2 hour hold!)

So, after being educated on some very scary things that can still happen after release, I was on my way. Given my little drug fest, I had to do that whole wheel chair thing. Here I am, chilled to the core, and I get chatty Fred as my escort. If you know me well, you know how annoyed I was the entire ride down. Things were going well…..we stopped and Lee ran in to a philly steak place to get me a sandwich….I stayed in the car…..Kim, sitting up, full of drugs…let’s just say I was going down fast…sweats, spinning world…all that joy. Sent Lee a text…bring me an ice rag NOW. He came out…and because he was much smarter than me…turned on the car blasting the A/C at winter levels. Whew….can I go to bed now? Kim was coming off the drugs. (My little episode gives me even more empathy towards those battling addiction…my four minutes compared to what has to be days…I can’t imagine the strength.)

Back at the hotel, I resume my left side resting and nibble on my sandwich that honestly was nibbled on only to prevent another full blown world spinning episode. Finally, rest.

The next day, still on narcotic for cough. I felt drugged…still…not at the same level as the day before, but I wasn’t firing on all cylinders for sure. We ran back to Chester’s for lunch and then it was time for the clinic appointment for results and being released to go home.

Prelim results: as we all hoped and expected, squamous cell papilloma. No signs on conversion in the samples taken. Due to having so many nodules, we are going on the assumption the same will apply to those nodules as well. It could not be true, but that’s the assumption we are on right now. So, where does this leave me in this little saga? On the left, I have the one that was sampled and another one sitting on the pleural wall. (There are some tiny ones in the left as well, but they seem stable. The right has some nodules, but they are still too small to sample (7mm and less).) The area against the pleural wall has changed…a good bit. It has a good bit of cavitation and that can be problematic. Where we are today is deciding if I want to have the lung resection and remove the two on the left leaving me with only nodules 7mm and under and then go to trial….or skip resection and go straight to trial. Either way…I’m going to trial-NIH/NIC Baltimore.

I go back to Mayo first week of October to visit with the thoracic surgeon that is focused on VATS procedures. My goal, if I proceed, is to avoid a full open procedure. To do the resections via robotic surgery. I’ve had an open procedure before. I know what that involves and I am going to have to work super hard over the coming days to put that experience on a shelf so that I can make the best decision on how to proceed. Leave the two large ones on the left and hope that the one on the pleural wall calms down…and that the one we biopsied stays benign and enter trial….or, resection and then go to trial to work on the smaller ones that would be left after resection.

Pulmonary papilloma just stinks. When the doctors at Mayo talk about how rare you are…you know you are rare.

So, that’s my medical update.

Have to say this…some folks read their Bible while in the hospital or doctors office for peace…some pray….this chick..well I have found there’s nothing better than an iPod playing Bethel Music, Hillsong, Nockels, Jobe to put this mind and heart at ease. Find your place and what takes you there….doctors, nurses all want you to be at ease. It makes their job easier, procedures easier and most of all….puts a smile on your face!

Please, do not think I am strong or anything close to that. I’m pitiful. I whine on a lot of days about this path…I really had rather not be on it…but I am. I don’t understand why, and I very likely won’t in my time here on Earth. All I can do is focus on one step at a time…one pebble at a time…and try not to view the mountain.

Peace out folks….time for more coffee. (Enjoy this coffee wisdom.)

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I’m tired. There, I said it. I am not strong. I am not tenacious. I am not some super-human that is out in this world over-achieving as life throws more health lemons my way. I am tired. I am just a good actor to the outside world. I have a feeling this resonates with anyone dealing with a chronic illness…..especially one that requires a seemingly never-ending relationship with operating rooms, various tests..all of it. Before I began to blog, I honestly didn’t talk about it much. I was like the ostrich who just put her head in the sand and went through life ignoring it as much as I could. I suppose I still do to some extent, but realizing I have this huge family sharing this walk has given feet to my words. So, today, it’s going to be a little chat about how being a patient is well, hard work.

In a perfect world,I, the patient, would walk into the exam room fully confident that the doctor would be well-educated, well-trained, and have a patient load that would indicate that my life is in good hands. When you have a rare, chronic condition…even the experts aren’t always experts. So, you walk in armed with years of paperwork, scans, research….you take on the role of the “most educated” and the only person in the entire world that has your best interest at heart. For lack of a better way to say it, it just stinks. Yet, it’s the life you have…and you live it.

You sit in your car as you drive back home wondering if it’s too late to get that medical degree. Wondering where the zeal for new ideas, research, outside-the-box thinking is lost as a doctor gets years of practice under their belt. When do doctors stop being the dreamers of all that is possible and become so inward focused that even the remote possibility they could be wrong..or maybe not know something is unspeakable? And if you doubt or question, somehow it’s that you have an anxiety issue….anxiety in that I don’t want to die…sure. If that’s what we are calling it today.

In some ways, life with a rare chronic condition was easier before the ability to “know more.” You went in, whatever was said or suggested-well, that was it. Wrong, right, dangerous, safe…..didn’t matter….because only doctors had the information and you only had the information that they were willing to share. We don’t live in that world anymore. We are told that we, the patient, drives our healthcare…but we really don’t. We can have all the research in the world….and you still can hit the brick wall of “I’m the doctor, I know all….this is rubbish.” My favorite right now is, “this is such a rare condition, unfortunately we lack the expertise in caring for this. Best wishes. ” I appreciate the honesty, as I’ve had doctors treat me that well….in hindsight…should not have. Yet…still.

It is estimated there are about 20,000 cases of RRP in the US and maybe up to 17% (huge unknown here due to the little research in pulmonary spread) of those go to pulmonary involvement and then estimates of 1% of those will convert to squamous cell carcinoma. Pulmonary RRP acts like cancer in so many ways, even if the tissue remains benign. There is no cure….none. The Gardasil vaccine series shows promise in that if we can achieve mass vaccination rates, we could reduce or possibly even eliminate future RRP cases…yet even that is tied into politics, fear medicine and somehow attached to morality. (Getting a vaccine does not make you sexually active….that’s just silly.) This is the life I live….the life God walks me through…..the life that sometimes has me paralyzed with fear and anxiety over all the “what ifs” on testing, treatment…..the life that causes me to doubt those that are to be trusted with my care….

So, I am not strong…I’m tired…but life is to be lived and sitting is not an option. I wonder just how many of us with a serious, chronic condition feel the same way…..but each day wake up and put on our mask. Do you?

John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.